A true Patient Champion

Lyla Horsley became a Patient Champion at the Nationwide Children's Hospital in Columbus on Saturday.

Lyla Horsley

There are a plethora of foundations and hospitals solely devoted to treating children’s illnesses. Among the many reasons those organizations exist, they strive to help parents answer one question — “Mommy, am I going to die?”

Lyla Horsley, who was 6 years old at the time, asked her parents that question when she was struggling to breathe, suffering from another asthma attack.

The answer was a resounding no.

Now, two years later, not only has Horsley’s initial fear of death subsided but she has been selected as a Patient Champion by the Nationwide Children’s Hospital in the annual marathon race in Columbus, Ohio. The race, which is scheduled for the second week of October, will feature one Patient Champion at each of the 26-mile markers along the course.

Horsley was chosen after her mother, Ellen Horsley, submitted her story for consideration. Ellen never imagined her daughter would be selected, but after receiving the email, Ellen couldn’t contain her emotions. She felt tears of joy flow from her face as she imagined family and friends standing by Lyla’s side as she prepared to run her third half marathon.

“This third time will just be unimaginably wonderful,” Ellen said. “I’m so excited to be able to do that in honor of her. It’s something I know with asthma, the chances of her doing it are almost impossible. I’m just really excited to be able to do it in her name.”

Ellen has setup a Facebook page — www.facebook.com/childrenschampionteamlyla — to give the community an opportunity to make donations in Lyla’s name, with proceeds going toward asthma research and Nationwide Children’s Hospital.

“I hope we can raise a lot of money and awareness, which will allow us to make a generous donation for such a great cause,” Ellen said.

Ellen won’t find out until September which mile marker Lyla will represent. She’s hopeful it’ll be in the first 13 since Ellen isn’t running the full marathon.

“I’ve put in a little side note, since I am running, can she please be one of the first 13, so I can run through her mile and be able to see that,” Ellen said.

Although she’s only running 13 miles, Ellen admitted she might travel a little further if Lyla isn’t in her section of the race.

“Once you run 13 miles, you can’t imagine running another 13 but we’ll see where she’s at. I might have to keep going until I get to her,” Ellen said jokingly.

One reason Lyla was eligible to become a Patient Champion despite living in Rubyville and attending Minford Elementary School is because she started receiving treatment at Nationwide Children’s Hospital two and a half years ago for asthma — a condition she has had her entire life.

Ellen realizes asthma is not an exotic disease and therefore, can be quickly dismissed by the general population.

“She has a pretty mild disease compared to some of the other diseases at Nationwide Children’s Hospital and I realize that,” Ellen said. “But to my family, that’s just as important as anything else because that’s what our lives revolve around. I hate to dull it down and say that it’s not a big dramatic disease, but I also see how blessed I am to have a kid that just has asthma.”

While it’s considered a common condition, it’s also a life-altering condition. Lyla underwent her first allergy test when she was 9 months old and was quickly labeled as an asthmatic. Her asthma was initially allergy induced but now it’s also exercise induced.

Lyla has also seen her fair share of hospitals. Last fall, she attended a birthday party. Unaware that her friend had cats, that two-hour celebration led to a two-day hospital stay for Lyla.

“It’s things like that you don’t even think about. ‘Can my kid come over to your house?’ ‘Oh sure.’ ‘Well do you have cats?’ You don’t think to ask that but something so small turns into a two-day hospitalization for my child,” Ellen said. “When we’re out somewhere and someone is smoking, I have to be that parent to say, ‘please don’t smoke around my kid.’ I’m not saying it to be mean, I’m saying it because I don’t want my child to spend two days in the hospital. I don’t want my child to not be able to breathe.”

Another episode for Lyla occurred when they visited an indoor water park. The chemicals in the water caused Lyla to have an exacerbation. They were able to keep her out of the hospital this time, but they had to administer steroids and breathing treatments for a week.

However, despite the normal situations that have caused severe problems for Lyla, nothing could prepare Ellen and her husband Justin for the moment of truth.

Ellen is a respiratory therapist at Adena Medical Center, which has given her the abilities to monitor and treat Lyla’s condition to a certain extent.

One day, when Lyla was 6 years old, Ellen noticed her oxygen was hoovering in the low 80s. Ellen asked Lyla if she was feeling OK. Lyla told her parents she was struggling to breathe. Ellen then looked at her husband and said they needed to get help.

“I said, ‘We really have to go to the Emergency Room. There is nothing else I can do for her. I’ve given her everything under my power. I need someone better than me to take care of her,’” Ellen said.

At that moment, Lyla looked at Ellen and asked, “Mommy, I cannot breathe, am I going to die?”

“It just tore my heart in two,” Ellen said. “There’s no explaining that, as a mom, when your daughter actually thinks she’s going to die. I didn’t have much response because honestly she could but I couldn’t tell her that she could. I just said, ‘No baby. We’re going to get you taken care of, you’re going to be OK.’”

Ellen admitted for the first several years, they didn’t have a good handle on Lyla’s condition until they were referred to Dr. Chandar Ramanathan at Nationwide Children’s Hospital.

He didn’t treat her based off of her medical records, he started completely from scratch. He did all of his own testing. He created a whole new regimen for Lyla.

“We have been amazingly controlled since then,” Ellen said. “We were using our rescue inhaler a couple of times a day. Now, we use it three or four times a month, maybe. That’s a huge, huge difference. She’s been going to Children’s Hospital for two and a half years.

“I believe it’s because of the treatment we’ve gotten her at Nationwide Children’s Hospital and now we’re under control. We were not under control at all for the past seven years.”

Lyla still undergoes a variety of medical-treatment options to control her asthma. She takes multiple inhalers. She takes allergy pills and allergy shots everyday. She takes nasal spray as well as eye drops. However, the treatment has improved Lyla’s condition.

This past winter was the first time she was able to participate in a sporting event. She played basketball at the Minford Elementary School.

“We were really nervous about it because we have to have her inhaler everywhere we go. Putting her out there on a basketball court obviously gave us anxiety. We didn’t know how she was going to do with it but she did very well,” Ellen said.

So, while Lyla’s life might be altered by asthma, she took comfort in knowing her mom told her the truth — she wasn’t going to die.

Lyla Horsley became a Patient Champion at the Nationwide Children’s Hospital in Columbus on Saturday.

http://portsmouth-dailytimes.aimmedianetwork.com/wp-content/uploads/sites/28/2016/07/web1_IMG_2095-1.jpgLyla Horsley became a Patient Champion at the Nationwide Children’s Hospital in Columbus on Saturday.